At every turn we have had better options than many of the preceding children on the neuroblastoma path. The odds we have conquered came at no small price, but we are still among the luckiest. We thank God for that every day. The combined treatments over the years have side effects. Some side effects are short term (weight loss and hair loss) others are long term problems. Liam’s profound hearing loss is one major long term issue that can be seen everyday. We are blessed once again that the trail blazers in the hearing loss community have devised technologies that assist Liam daily. We use hearing aids and for school we purchased a fantastic microphone system so that the teachers are heard over a crowd of 6 year olds. The chemotherapies and radiation that were used also cause problems that we don’t see everyday. Liam’s liver is one organ that has been ‘gunked’ up with the 4 dozen blood transfusions and toxic chemotherapies received. Our last dose of chemotherapy was February 2013 we had to stop the plan/protocol early because of how terribly his liver and body was tolerating the medicine. It is amazing how much treatment continues even after the tumors have gone. There are so many medicines that are given just to keep the cancers away. If memory serves me right we would just be finishing the protocol for the brain relapse if his organs had tolerated the treatment. His brain tumor was removed 2 years ago! What a blessing in disguise if you ask me. I have learned years ago that the ups and downs of cancer are outrageous. What can seem like the end of days can turn out to be the best thing around. My everyday became so much better when I finally accepted that there are many things that we can not control. In a sense, I leave it in God’s hands. I’m not saying I don’t freak out from time to time but I am getting better with practice.

I write today with the hopes to share our joy and promote hope. Last February we were dealt a horrible hand. After receiving the all clear on all things neuroblastoma we were told that a new bigger problem arose. A devastating long term problem that can happen after cancer treatment is a change in a persons DNA. I will explain this in the way that I understand it. To put everyone at ease this story has a good ending.

Everyone has the picture of the DNA ladder in their mind…the swirly ladder. Liam’s DNA was damaged in a way that one of the ladder rungs had gone missing. The missing rung of the ladder was going to continue to replicate damaged DNA and turn to a different form of cancer(AML) We had a lot of discussions with our wonderful team at Lurie Children’s Hospital and for the 3rd time in 3 years we were facing the death of our boy. Needless to say we were shocked. Our treatment options were severely limited because of his liver issues. We were told that this new problem could only be repaired by having a Bone Marrow Transplant from a Donor. We tested ourselves and Jack and we were not a match. The team found a match. A young man that took the time to register himself through www.bethematch.org (I joined that list years before Liam was even born, I hope you will to). We had to do some more scans and exams before heading down the road of treatment choices. On the check we were given the grim truths and chances of survival that were bleak. It was hard to believe that they were talking about our boy while Liam was feeling as strong he had been in a long time.

We did what the Kelly’s do best, put on a smiling face and headed to Disney. It was an amazing trip and we were able to enjoy each other and have time for reflection. Long story short was that we arrived home from California and started a new plan. We chose to live with the health we have now and prayed that if given a chance to heal, Liam’s body could repair. Sounds naive, but his poor body has never had a chance to rest and heal. We have always relied on nature for good nutrition we just started leaning more heavily on nature and God. You might be wondering why we didn’t share this diagnosis with you before. It has been a long year but we really believed that this problem would resolve and the more I would say it out loud the more doubt I would see in the eyes of Doctors and we couldn’t invite more doubt. We were living everyday like the change was already happening. Liam was getting better and better before our eyes. I believed that we were in for a flood of good favor and today we are celebrating that favor.

Liam had a bone marrow biopsy on January 30 along with his other scans. His Brain scan was clear and wonderful I joked with him that there was nothing but a super smart brain. It took what seemed like an eternity to have the bone marrow results but they finally came back and to the astonishment of all, Liam’s DNA has returned to normal!!!!!!!!!!!!!!!

What does this mean?

There is no need for a bone marrow transplant. This is a rare wonderful thing, we haven’t even asked how rare. It is like we won the good blessings lottery. We get to continue healing with nature. Liam remains independent from transfusions. We haven’t had any blood or platelets since the end of March 2013. The only visits we have are the monthly blood draw and IV port flush that we can do at home. This last year has been amazing. Liam has grown in mind, body and spirit. Every month his blood counts are better than the last. It is indescribable to watch Liam and Jack together. At one time we feared that they would never meet and now they are best buddies.

I have shared this story because I want to share our joy, our new lease on life that is free from looming disaster. What we have witnessed is a miracle and there are many people who are facing unbelievable odds and I want to encourage your faith. It was from hearing stories of the miraculous that we were strengthened to believe. No matter what the future brings we are living today the best way we know how and enjoying every minute with family and friends.

Oh Halloween, how we love you. Liam has always loved to dress up, he has a costume for every day of the week. Walking door to door for candy just makes it a dream come true. Liam is going to be the toughest little Captain America and Jack is working on cutest bumble bee. I don’t think a little rain is going to keep Liam from celebrating to the fullest. Let me start the last year in review to say we are doing great. Liam is amazing and thriving. We LOVE where we are right now! This is the icing on the cake.

Halloween 2012 wasn’t so spectacular. In my mind it marks the start of our climb from the bottom to the top. Every part of Liam’s system has taken a toll from all the treatments. Taking the chemo pills that barely bothered him a few years ago left him the most miserable I’ve seen him. Even Liam himself came to the conclusion that we were taking too much of the medicine. October 2012 was basically the last cycle of chemotherapy. It is indescribable to have treatment behind us.

So we began healing….

Preschool was a little more than we could bite off last year. We followed Liam’s lead and began rebuilding at home. We were visiting the hospital very frequently(twice a week) for blood and/or platelet transfusions. We had some weight to gain, muscles to build and cuddles to share. Liam was better and better every day. By Christmas, Liam had rebuilt a lot of endurance and we were thrilled for our Australian family to visit. We enjoyed a phenomenal trip to Disney World. It was so fun to explore the parks by day and swim and play with cousins at night. We were lucky to be able to visit the hospital near Orlando for a platelet transfusion without missing out on the fun.

In the new year, we started gymnastics and little ninjas for gaining strength and flexibility. Liam is growing stronger every day. He gained weight without trouble and he is starting to grow taller. The doctors expect him to be petite related to treatment especially the second round of radiation to his spine. Small and Mighty sounds great to me!!

February was the last set of scans that we have done. The tests remain clear of neuroblastoma! Awesome!!How to celebrate? DisneyLand!!!! Liam’s favorite movie is ‘Cars.’ So, naturally, it was his wish to visit Carsland, a new amusement section at Disneyland. Carsland has been a topic of discussion for years now. We were impressed, I may have liked it even more than Liam;) The boys enjoyed every minute, lots of swimming and fun. We were still receiving a lot of transfusions back then and I didn’t want to visit a hospital on this vacation so instead of flying home (requiring platelet transfusion) we took a 3 day train ride from California. It was such a wonderful trip. I never imagined the adventure we would have, it was tight quarters but that was half the excitement. No trip is complete without a little drama, running out of diapers in Albuquerque was enough drama for us. Will saved the day by dashing to find supplies during a strictly enforced super short stop.

First day of Kindergarten

After returning home we sat down with some Doc’s and Nurses to plan the future…
-We are finished with treatments in New York.

-We are taking a well deserved break from scans. The testing weeks are always stressful both physically and emotionally so we are just choosing to listen to Liam and his body.

There was one remaining bag of Liam’s stem cells, gathered before his marrows were damaged . We planned with great hope in our hearts that these cells would hold the answer to Liam’s recovery. Our prayers were answered!!!!! March 29th 2013 Liam received the stem cells and received a platelet transfusion. That was the last transfusion Liam received. We went from at least weekly transfusions to absolute freedom. WHAT!?!?!?!?! NO MORE TRANSFUSIONS!?!?!?!?!? In Liam’s life, he was transfusion dependent more than not. This is a gift straight from God! Not only is he independently maintaining his blood counts Liam is getting better every month. A snapshot of his blood proves his healing is through and through.

Liam’s only medical treatment is taking half a pill daily and a monthly blood draw that we get to do from home with our excellent Home Health Nurse, Cindy.

We are living life to the fullest and take nothing for granted. Our summer was outstanding. Today, Liam is proudly going to full day Kindergarten near our house. Enjoying new and old friends. We are leaning on nature and all that she has to offer to help continue healing. The little fella might not admit it but I think he likes the fresh vegetable juices that we now drink. Jack is just as dreamy as Liam. Jack is lovable funny and adventurous. The boys keep Will and I on our toes. They are adorable together playing snuggling and making mischief.

Thanks for continuing to keep us in your prayers, The Kellys are a work in progress. There is nothing more comforting than feeling your love and support. We have come so far from last Halloween and it seems like light years from when this all began in 2010.

We snuck home on our last flight from New York August 12, 2012 I was shocked to have no questions from the flight crew I was not a petite pregnant woman. Some sweet old man in a grocery store in Manhattan asked if I was carrying three babies, bless his heart;) Our due date was the 22nd and since Liam was nearly 2 weeks late I figured we were safe but found an obstetrician in New York just in case. We had time to sort ourselves and Liam had a chance to recover. We went to Liam’s preschool orientation, snuck in his first Cubs game just settled back into being home. Since we had chosen to never find out the baby’s gender Liam had his final requests for a boy and they were answered. Everything was wonderful for Jack’s speedy delivery. Sunday, August 26th Will and I headed to the hospital at 11am and Jack was in our arms at 12:58 weighing in at 10lbs4oz. Liam was so excited to meet his little brother. It was just as wonderful as we thought it would be. Fast forward two months and Liam is still absolutely smitten with Jack. He is so hooked on the little babe. Jack has given us something truly positive to focus on, the best medicine a boy could have.

– this post was written october 31 2012 and I would have sworn I posted it….oops:)

As we planned, the ommaya (brain port) was placed May 1. Everything went off without a hitch then we were off to New York within the week. I will not dare to bore you with the details from May through August. We came and went frequently to the Big Apple. LaGuardia Airport and its snack spots were too familiar to Liam. We were blessed with safe uneventful travel. If our flights were delayed it was only just long enough to eat a proper breakfast. Truly we had no complaints, even traveling 9 months pregnant we had zero issues. Our stay in New York was great, during the week we would stay at the Ronald McDonald House of Manhattan and on the weekends Terry & Tony Cullinan(my cousin) welcomed us with open arms. It was amazing to have a real home full of normal goings on and wonderful meals. We could really forget about the hospital stuff. It was such good medicine to be away from the the city. Liam especially loved heading to Terry’s, he made himself at home very quickly and in so many ways. He had his own room that he could retreat to when tired, there is no pressure but to be ourselves, it is home away from home. I wish there was a way to properly thank Terry, Tony and whole family for allowing us to invade through the whole summer, it was priceless.

The treatments had there up’s and down’s. I am grateful for the research and treatments done at MSKCC they are on an island of their own on the forefront of cancer treatments. There were lots of fear and frustrations but at the same time we found laughter, excitement and joy. We try to make the best of any situation. We are happy to be in the game, there are so many kids that don’t make it off the bench. Liam is an amazing little guy, I’m sure you have picked up on that over the years. You wouldn’t believe how this 4 year old can be so tolerant and adaptive to treatment issues.

We were thrilled to realize the brain radiation injection treatment only had 2 cycles. I was absolutely certain we had 3 to complete but I was absolutely wrong. That was such a gift from God. It was plain scary for Liam to have frequent needle pokes to the ommaya(on his head) Thankfully he felt little effects from the injections. Honestly the toughest part was being separated from Liam for a week. As a pregnant woman it would have been dangerous to the babe for me to have contact with Liam. We followed the rules very seriously and Liam seemed to understand and tolerate my “allergies.” He was none the wiser that the babe had anything to do with our separation.

Summer in New York was fun. There is always something new to explore. It was really special to have all the time together as a family. Liam speaks of New York fondly and I think it’s partly because he was with some of his favorite people all the time. Daddy worked only at night after Liam was snoozing it was a dream come true. It really made the yucky times easier to have fun together.
The reprieves with family we had out to the near and far suburbs of New York really made this terrifying summer something to look back on with very fond memories. Whether we were swimming or barbecuing we had fantastic distractions. Liam even has a Yonkers library card!

Welcome to the big apple!

– this post was written october 31, 2012 and I would have sworn I posted it…. oops:)

Today a dear friend was laid to rest, Officer Michael Schaefer you will be missed by all that had the pleasure of knowing you.

Maureen and I were both lucky enough to meet Mike many years ago, in fact we have each known Mike longer than we have know each other. Mike’s life was tragically cut short last Thursday when he was hit and killed by a taxi. Mike was an amazingly generous man, and gave Maureen, Liam (Mighty Liam as he called him) and I so much support over the past few years. He was always generous with his time, smiles and laughter. Mike had a wonderful zest for life and truly understood that each day is a gift and should be lived to the fullest.

I would encourage everyone to be a little bit more like Mike. Surround yourself with people you love and have fun, make every day count and find a way to make an impact in the world.

For those that knew Mike, we know that the world lost one of the truly great people. For those that didn’t know Mike I included a video piece NBC news did on him last week.

I just wanted to ask all our friends to take a moment to say a prayer for Mike’s family.

Life has been a little crazy as of late. We have been bouncing back and forth to New York every few weeks for treatment, not to mention Baby Kelly is due to make an appearance any time now. We have not had a lot of time to stop and update everyone via the website, so if you are around this Saturday come out and meet us at the Nil Tap for a fun block party to support Liam.

What: All You Have to do is Tri Fundraiser!Where: 5734 N Elston Ave. Chicago, ILWhen: This Saturday – August 18th – 3:00 – 8:00 pm

For those of you who have not heard, our friend Mike Schaefer heard what happened to Liam while we were in Hawaii and all the treatment Liam has had to start up again and said to himself that he needed to do something. Mike was already planning on doing the Chicago triathlon so he thought about having some folks sponsor him. It was then that his mother stepped in and said “Mike your thinking to small. Let’s do this right” it was then that they came up with the idea to have the block party…and the rest is history.

It should be a great day. Mike is having a couple of the Shannon Rovers come, a firetruck for the kids (or adults), a DJ, food and great raffle prizes!!! We cannot wait to see everyone, so come on over if you are in town and looking for a fun way to spend Saturday!

Thanks for throwing this party Mike, it will be great to see everyone!

Liam was amazing in this tiny space for over an hour long scan, he did it for the first time without being sedated.

For those not following Liam’s adventures on facebook, sorry for the radio silence, we have been a little busy since our last update here on the website.

I’ll start with the good news, about two weeks ago Liam was poked, scanned and underwent a battery of test and the result have all come back exactly the way we prayed…The treatment is working and Liam is headed toward a cancer free life again!

We have been bouncing back and forth between Chicago and New York for treatment, and as soon as things calm down a bit we will update everyone on the New York leg of this adventure.

Hope that everyone had great holidays, whichever holiday it may be. Liam had been asking every morning for a week if it was Easter day so the excitement was built and the morning was a lot of fun. We decorated hard boiled eggs and hid candy/toy filled ones. Frantic searching and lots of discussion about whether Santa and Easter Bunny are pals, made for a great day. Liam deserved a great break after his long week of Chemotherapy.

We have been staying on track with the schedule, which is such a blessing. We finished radiation like we thought on March 20th. The radiation oncologist was happy with the way Liam was tolerating treatments. He had concerns it would have taken a much bigger hit to his blood counts, so luckily we are hanging tough. It is much scarier going through the second course of radiation especially when the beam is directed at his brain and spine. Hopefully the secondary effects are minimal. We are heading in and out of Children’s regularly for blood products( blood and platelets) Thankfully, we haven’t had to stay the night since his brain surgery.

Our New York trip was 5 stars. We flew out 26th and were greeted by my cousin Terry at the airport. It was wonderful to have a familiar place to stay and such inviting company. We had a delicious dinner and made ourselves at home. If I had any choice in the treatment city, I would have picked New York because not only do we have family there but they are unbelievably generous and willing to help. It couldn’t be a better situation.

We checked out the Ronald McDonald house before our appointment, it is very close to Sloan (Only a 10 min walk.) The rooms are simple and well used, there is a great set up for kitchen needs assigned fridge and freezer space, cabinets and lots of counter space to prepare food on. It seems like a well thought out kitchen for multiple family use. Most importantly for Liam there is a large playroom and seems like daily activities and other kids looking for fun. We were very bare for this trip being it was so short. I feel like we can make the space like home away from home without too much trouble.

Sloan is a massive hospital. My cousin, Terry, happens to work in the same area, not connected to the Pediatric Day Hospital but she is just 3 floors below us. You can see why I found this trip a success even before meeting the new team. It was impossible to guess how we would manage the summer but after doing a bit of a dry run it puts my mind at ease. The Day Hospital is similar to Children’s with one major difference, the playroom is better. Liam actually played in it for at least an hour after we were finished. Not a bad way to start things off. It was stress free for Liam, which was very important I hoped we would leave with him wanting to return.

The most important part of the visit was meeting Dr Kramer. It was nerve wrecking to meet her because I just wanted it to go well and to like the person in charge of our treatment. She was lovely. She was personable and great with Liam. She seemed so comfortable with Neuroblastoma. It is her life’s work and we don’t have anyone that only deals with NB at Children’s so it was reassuring. Liam’s NB is a fluke to begin with but then for it to go to his brain is a HUGE fluke. We are just continuing to play with the cards we were dealt. As we said before it isn’t until recently that there is even an option for treatment. Dr Kramer described the next phase of treatment as the ‘easiest’ part so far. We were thrilled to hear that. As a pregnant woman I will not be able to care for Liam for long periods of time after he is injected with the radioactive treatments. If Will and my mom were stuck with a super miserable Liam for a whole week it would be way worse than it is already going to be. Back to positives… We don’t have to stay in NYC for the entire summer!!! It is going to be 3weeks of treatment then 2wks in Chicago. If we weren’t 15 minutes from one of the best children’s hospitals in the US we might not be allowed home, but thankfully we are. So, that schedule starts May 6th and ends August 4th( if all goes well and if my math from last night is right) We had to wait and see how Liam was doing before planning on a travel date. After all that excitement was over we played at the local park and trekked over to the huge FAO toy store. Perfect end to our mini trip.

Home again on the 28th, had a much appreciated blood transfusion before the weekend. The mix of radiation exhaustion and healing can leave Liam pooped but in good spirits. We took a family trip to Jump Zone and even though we stayed less than 20 min before he was zapped it was worth the trip.

April 2 we started the second cycle of Chemo this was some of the same with an addition of 5 big pills every morning. Thank God Liam takes pills without much trouble. This is where bribery comes in handy. The first day was definitely the worst. Since removing the brain tumor Liam has been super sensitive to IV Fluid causing HORRIBLE headaches. Monday we must have over loaded him and he was in agony. Thankfully, it didn’t occur again that week and honestly it ended up the best chemo week to date. He was bursting with energy. As we expected he crashed on Easter Sunday so we missed meeting cousins and family but quiet holidays are ok too.

Monday, April 9th, we defrosted and transfused a bag of Liam’s Stem Cells that we had harvested summer 2010. We were lucky to have leftovers for just this rainy day. This time is drastically different then the last times he received his stem cells. Last year we were in hospital for a month at a time, in isolation and miserable. This time I was just a long day visit and back home. No isolation and the cells were received by Liam without any trouble. We expect the Stem cells to kick in within about 2wks. Anything is possible with them, I pray they mend all that has been broken with all his treatments. Why not hope and pray Miracles happen and only time will tell. The next step causes trouble with blood counts so we needed to boost him up before knocking him back down.

That’s where we stand today. Things are looking better today than yesterday and I am thrilled to finally have more pieces to our schedule. The 3 month testing will be 25th thru 27th and then the brain port will be placed on May 1st. As always keep us in your prayers especially during his second brain surgery. Thank you for your supportive cards, wishes and it is so amazing how generous you all are, Thank you!!

There are days when it feels like it was yesterday Liam was running on the shore in Honolulu before all this craziness started. He was running so fast his little legs were a blur. We really only enjoyed a few special hours swimming and playing before Liam became sick. We are so grateful for all your support, it is amazing to he held up in so many ways. While we were in despair and at our most desperate it was so encouraging to feel you all with us. Even just remembering the feeling of finality on the flight home brings me to tears. We didn’t know what to expect and I must admit because Neuroblastoma is so nasty I did assume the worst. Thankfully we were greeted with such greater hope in Chicago.

We found a loop hole in our situation. Liam did so well with his treatment but the only flaw in the treatment is it doesn’t cross into the brain. All it took was one little cancer cell to start trouble in his beautiful brain and the standard treatment doesn’t cover that spot. We have been told it is extremely rare to have brain involvement and my first response is that it wasn’t long ago that children did not survive long enough to find out. We have benefited from so many champions before us. We are not the first kiddo that this has happened to. Again we get to follow in the successful shadow of so many children and thankfully we are in a situation where there is a specific treatment protocol. The studies that have come from 2003 have a remarkable 80% long term survival for children in similar boat. The frightening thing is that before the brilliant doctors in NY figured this plan it was a certain death sentence children were given less than 6 months to live. You can see why we are excited by this study. We have never been given such promising numbers through all of his treatment. I was praying for a clear sign of how to proceed and this was just the billboard we needed.

Hawaii was supposed to be our family re-centering before testing on Feb 17th. We will always wonder why he had the brain bleed there is no way to know for sure. We celebrated Liam’s 4th Birthday at Pump it Up a few days before we left and he could have banged his head around having so much fun, it could be taking off and landing a few times on the airplane or tumors can just bleed. Certainly no one that saw Liam playing or at school would have any idea of the rather large rapidly growing tumor.

The treatment started on the day of surgery February 7th. Our Neurosurgeon reported the tumor was like a Swedish meatball and he was able to remove it entirely. Liam is recovering so well, it is amazing how fast he bounced back. We started our first 1 week cycle of chemotherapy Feb 20th. Liam snuck through like a champ by the end of the week we figured out how to manage side effects really well.

Radiation treatment to Liam’s spine and brain started Feb 22nd. The course of radiation this time is going to be tougher. The initial plan is Monday- Friday at 7am for 20 to 25 sessions. Liam is put under general anesthesia every morning for 15 minutes which is tricky because when the sedation time is so short the little guys can wake up super pissed off. It’s been a roll of the dice so far. Some days are great some not so much, but he is doing fabulous. Our tentative end date is March 20th. Thankfully the treatments are at Northwestern downtown and at that hour there is barely any traffic and we usually are door to door in 20 min. The difference in this time and the last is Liam is a lot stronger now and has needed less blood products to support him. At least twice a week we go straight from Northwestern to Children’s for a few hours. The few days that chemo and radiation were together were long days but since we have gotten really lucky not spending too much time away from home.

Liam is running for long days and is appropriately tired, and lost some appetite related to chemo and radiation. Occasionally he suffers from headaches but they have become less frequent. Sadly, he is losing his hair just in the last few days. It is crushing to see his locks fall again. It is much harder to explain things this time around because he is so much smarter, older and has excellent questions that I don’t have the answers to.

What’s next… we have a consultation in New York on March 27th with Dr Kramer from Sloan Kettering Hospital. They are a very special institution in the advances in Neuroblastoma. The details of our treatment need to get hammered out and I hope we have some questions answered during this visit. From reading the study it seems like our time line is…

Finish radiation 3/20

Consult in NY 3/27

Cycle 2 of chemotherapy at Children’s Memorial

Stem cell rescue( using the leftover Stem cells collected for transplant to boost his recovery)

Placement of head port- ommaya

Move to NY for 3 months (May)

Back home to Chicago

Welcome Baby Brother or Sister (Surprise, for those that didn’t know I was expecting in August)

Back and forth to NY for second phase of treatment

Oral Chemo at home in Chicago

Live forever cancer free!!!!!!!!!!!!!!!!!

So that is the plan as we know it so far. A lot to bite off, but much better than what we thought we were up against. Liam is thrilled to welcome a new baby. Honestly, it comes at just the right time no matter how you look at it. Babes are a blessing for the hope and joy they invoke in every way. We planned to keep it a secret from Liam but there was no better time than sitting scared and hopeless in the hospital in Honolulu to bring up the most exciting new ever. As I told him I worried he may not meet his sibling but now I am certain they will be the best of friends. I have a wish that I delivery in Chicago instead of NY but no matter what it will be just fine.

Just wanted to thank everyone for all the well wishes and prayers over the last few days. Liam is doing amazing considering everything that went down the past two weeks. He is up on his feet and even made it to school on Valentines day to see all his buds and score some candy.

We still have some planning to finalize, but it is looking like we will be in active treatment for about 9 more months. The treatment will consist of radiation and Chemo, which both start this week. We will be trying a new type of antibody as well in the coming months and we will share more on this journey as we conquer each new challenge.

I figured a few pictures would tell a better story on how Liam is feeling than another rambling post. We wanted to thank our buddy, the amazingly brilliant and kind Nate Smith, for hosting a wonderful adventure into the secrets of the field Museum collect. Liam always loves when Nate shows us around.